First, though, all the latest Lidcombe Link days and workshops in the UK over the next few months.

Transcription

1 Wherever you are, whatever the weather, a very Happy New Year to you all! Here we have the 2008 New Year edition with our usual features, Dear Sue and Can You Explain That Again, as well as Mark Onslow s ISAD conference paper in full which he has kindly agreed to share with Lidcombe News. We also have a taster report from Rosalee Shenker about the Lidcombe Program Trainers Consortium meeting last November in Montreal, Canada. A fuller version of this will be available in the next edition of the Lidcombe newsletter. First, though, all the latest Lidcombe Link days and workshops in the UK over the next few months. DATES FOR YOUR DIARY Norwich is holding a Link day on Tuesday, 26 th February 2008, at 40, Upton Road. Bring/buy your own lunch. Contact Mary Kingston for details, directions etc. on tel (new number), or kingstonamee@talk21.com The Lidcombe Link meeting at the Apple House, Oxford is scheduled for Wednesday, 27 th February, Lunch together before if you wish. Ring Polly Mitchell for confirmation of date, venue details and directions on , or her on: polly.mitchell@nhs.net The next Link day for the Northwest is in Macclesfield, on Tuesday 15 th April from 1.00 for a 1.30 start. The venue has not yet been confirmed so contact Louise on Louise.Tweedie@echeshire-tr.nwest.nhs.uk for details of this event. Contents Page 1 Dates for your diary Page 2 News of training courses Pages 3-7 Mark Onslow s ISAD conference paper Page 8 Just Explain That Again Pages 9-10 Dear Sue Pages Report from Montreal about the LPTC symposium As there have been several staff changes in the South East, Margate will not be running its next Link day until the summer. The May edition of Lidcombe News will give details of this but you may also contact Samantha David on tel or her on: samdavid@fsmail.net if you want information on this before then. Contributions to Mary Kingston. Send your ideas and questions to: Speech and Language Therapy Department, 40, Upton Road, Norwich, Norfolk, England NR4 7PA Tel address: kingstonamee@talk21.com I can't promise to include everything and have to reserve the right to edit contributions as necessary. But I'll do my best! 1

2 COURSES AND EVENTS There are two courses in Scotland in February 2008 The first one will be held in Stirling at the Royal Infirmary on Tuesday 12th and Wednesday 13 th February with Rosemarie Hayhow and Polly Mitchell presenting. For further details contact The second Scottish workshop will take place on February 18 th and 19 th 2008 in Glasgow and the person to contact for details of venue, costs etc. is Gillian Brady on This course will be delivered by Mary Kingston and Sally Wynne. Directly following this workshop, on February 20 th 2008 Mary and Sally will be also be running a refresher day in Glasgow. This is a one day course, only open to therapists who have already trained in the programme and is similar to the workshops offered annually in London. Again the contact is Gillian Brady on Gillian.Brady2@ggc.scot.nhs.uk Rosemarie Hayhow is running a course in Bristol, also this Spring, and for local therapists. For dates, details of costs, venue etc. contact Rosemarie on rosemariehayhow@btinternet.com There is also a workshop in London in the Spring of This will be presented by Mary Kingston and Sally Wynne at the Royal College of Speech and Language Therapists on March 17 th and 18 th. Contact Sally Wynne on robertsallywynne@boltblue.com for a flyer or any queries you may have. If you do not get a place on this course contact Sally for alternative dates. Ireland, south and north, is running workshops in April 2008 with Rosemarie Hayhow and Mary Kingston presenting. Cork, in the Republic of Ireland, is hosting a course for local therapists only on April 14 th & 15 th 2008.This is for HSE/South Speech and Language Therapists Contact Tricia Diamond on Tricia.Diamond@mailp.hse.ie The Belfast course in Northern Ireland is open to all and will be held on April 16 th and 17 th Contact Fiona Hodkinson on fhodkinson@clady.bmc.n-i.nhs.uk or Tel for details of costs, venue, etc. Following the popularity of the one day update/refresher on the Lidcombe Program, Mary Kingston and Sally Wynne are currently organising the annual one in central London at the RCSLT, for June 10 th The course is only open to Lidcombe Program trained therapists. For a flyer contact Sally on tel or robertsallywynne@boltblue.com or kingstonamee@talk21.com 2

3 This article by Mark Onslow first appeared as part of the 10th International Stuttering Awareness Day Online Conference. For more details visit Lidcombe News is grateful to Mark, and to Judy Kuster for their kind permission to print it here in full. Lasting blissful relief from early stuttering? by Mark Onslow The cohort of those with early stuttering. The term "cohort" refers to a group with a particular characteristic or characteristics who participate in research. There are many cohorts of interest in stuttering research: ones with different genetic histories, different stuttering severities, different psychological profiles, and so on. The cohort of interest in this paper is children younger than 6 years. In this paper I want to present a personal view of what I think science has done for this group. Why science? Because I want to talk about what science has done for this cohort, this does not mean that I necessarily think that science is the key to life. Science is only one way of doing things. After all, there are limits to what science will do for us. You won't, for example, find peace, love, or happiness in the output of science. However, scientific treatment research can bring some benefits. One branch of scientific treatment development clinical trials allows scientific pursuit of efficacious treatments (treatments that show positive results), and when those efficacious treatments are found, clinical trials development enables them to be refined by comparing the new treatment to established best practice. In the field of stuttering research, clinical trials enable us researchers to search for ways to find some measure of lasting relief from stuttering. You might find bliss in life such as peace, love, and happiness outside the domain of science, but you won't find a blissful treatment for early stuttering. I certainly would not entertain a treatment for stuttering that emerged from somewhere else than science. When a child and parent come for help to our clinic at the Australian Stuttering Research Centre (ASRC), I consider the responsibility too serious to do otherwise. But can lasting, even blissful, relief from the effects of this disorder in young children be found in the clinical trials output of science? That question is my topic today, and I will give the best answer that I can at this time. 3

4 What is a clinical trial? So first, what is a clinical trial of a stuttering treatment? Recently, my colleagues and myself (Onslow, et al., 2007) have suggested that the clinical trial is the smallest unit of output of stuttering treatment efficacy research that clinicians can usefully interpret. It is the only way for them to find out scientifically how good a treatment is in improving the lives of clients who stutter. We argue that, to be clinically useful, a clinical trial of a stuttering treatment should, among other things, evaluate an entire treatment, and in the case where speech observations are made, those observations should be made on speech beyond the clinic. Without improved speech beyond the clinic, a trial is just not convincing. I, for one, would not consider attempting to use a treatment to alleviate a child's stuttering without evidence that the treatment produced benefits beyond the clinic. All evidence is not equal. Robey (2005) recently drew attention to how the traditional phases of clinical trial development might be applied to speech pathology treatments. Phase I clinical trials are preliminary investigations into the possibility of a new treatment, conducted on only a few volunteers. The number of participants in Phase I trials are quite few. Phase I trials may be prompted by laboratory evidence indicating a potentially worthwhile treatment. Or they can be prompted simply by a good idea that makes a lot of sense. The primary considerations in such trials are fundamental safety issues with the treatment, and whether the treatment works from the perspective of the client and the service provider. It is also important to determine whether people will comply with the treatment in these trials. It's no use if the treatment works but no-one will put up with it. You don't want the cure to be worse than the disorder, as, I'm sure you will know, has happened more than once during the history of stuttering treatments. In the event that a Phase I trial shows promise, the researchers can move to a Phase II trial, which involves a few more subjects. The prime considerations during this stage of treatment development are to establish estimates of (1) how many participants who stutter will respond to the treatment, (2) how much the stuttering is reduced, and (3) the "dose" of treatment that is needed. Phase II trials data that are unconvincing on any or all of these points potentially indicate that treatment development should be stopped at this phase. In a worse case scenario, a treatment that produces a small treatment effect in few participants after a long period would be abandoned without question. Phase III clinical trials evidence is the "gold standard" of evidence for a treatment. It is one or more randomized controlled trials. These trials commonly involve two groups, one receiving the experimental treatment and a control group or comparison group. This strategy is used to see whether a treatment is better than nothing, and how better than nothing it is, which is useful information. However, randomized controlled trials can also be used to see which of two or more treatments is superior. 4

5 The good news The news is good, or at least the scientific news is good, about the treatment of preschool children who stutter. Using the Onslow et al. definition of a clinical trial, there have been 13 clinical trials of treatments for preschoolers. Interestingly, 13 of these have been for verbal response contingent stimulation procedures treatments where adults say something when a child does or does not stutter. The first of these trials were what could be classified as Phase I trials in the 1970s (Martin et al. 1972; Reed & Godden, 1977), and the more recent are Phase II and Phase III trials. Examples of the latter two are Miller and Guitar (2007) and Jones et al. (2005). These are trials of the Lidcombe Program, which is a particular treatment model for verbal response contingent stimulation. Some of this clinical trials literature about verbal response contingent stimulation contains reasonably compelling follow-up periods. Phase III trials allow us to estimate what the effect size might be. For example, the odds ratio in the Jones et al. Phase III trial was 7.7, suggesting that at 9 months after treatment children who received the Lidcombe Program were 7.7 times more likely to be stuttering below 1.0 %SS during everyday conversations than children who did not receive the Lidcombe Program. Incidentally, I mentioned 13 trials. What was the 13th? Well, Trajkovski et al. (2006) published a Phase I report of a child who received a treatment involving nonprogrammed instruction in syllable timed speech. Although the results for this single case were intriguing, I don't think we can make much of them at this stage. Why only verbal response contingent stimulation trials? Virtually all of the clinical trials reported to date for our young cohort have been trials of verbal response contingent stimulation. I think that says a lot, but I am not sure what it says. Why is it that these treatments are virtually the only ones that have been evaluated in their entirety with speech measures made beyond the clinic? Fortunately, though, there are treatments in the pretrial stage of development, and we can anticipate that clinical trials of other treatments are available soon. The preliminary report by Yaruss et al. (2006) is a good case in point. How good is the news for the young cohort? So, the news is good. There is compelling, replicated evidence that verbal response contingent stimulation is an efficacious treatment for preschoolers who stutter. But wait, there is more! Nature's treatment weighs in also. Natural recovery does not work as often as verbal response contingent stimulation, but it does work. Exactly how often is a discussion for another day, but when it does work it is certainly cheap. So, is that good news the end of it? Stuttering goes away and the problem is fixed? Is it not the case that there may be nonbehavioral features of stuttering during its first years? Surely we can't ignore information that peers of stuttering children recognize stuttered speech and evaluate it negatively in the preschool years (e.g., Ezrati-Vinacour et al., 5

6 2001). Surely we cant ignore information that preschoolers may express emotional distress at their stuttering (e.g., Bloodstein, 1995). And surely we cannot ignore negative attitudes to communication that may emerge at the end of the preschool years in stuttering children (e.g., De Nil & Brutten, 1991)? No, obviously we cannot ignore those findings as clinicians. It would be inappropriate not to include them in our clinical practices. But the issue is whether nonbehavioral problems go away when stuttering goes away in preschool children. Is that the case? My answer to that is that there are no scientific findings to suggest otherwise. Further, my answer is that clinical observations made by myself and colleagues at clinics here at the ASRC and the nearby Stuttering Unit in Bankstown Health Service have led us to form the view that there is no reason to believe otherwise. Blissful relief? Could science and we be wrong? Yes on both counts. Future research may show residual nonbehavioral problems some years later with stutter-free children who have been treated successfully during the preschool years. And we my colleagues and myself who made observations of children who have been successfully treated are not clinical psychologists and something could have been going on that we have been missing. But as I mentioned earlier, this is a personal view, and that is my story, and I am sticking to it. Has the Holy Grail been found for stuttering preschoolers. No, that would be going too far. Has blissful relief from the disorder been found? I would go as far as saying yes. When stuttering goes away during the preschool years after successful treatment due to the work of a clinician or nature then the experiences of children and parents are indeed blissful. And, if I may, one of the benefits of being a stuttering treatment researcher is to experience that bliss vicariously. I recall vividly talking to various children years after they participated in clinical trials, and being delighted that they could barely recall why they came for treatment. But this is about them ultimately, not about their parents, or me, or anyone else. Is their relief lasting? That is for science to say, and it will say something about that shortly (Jones et al., 2007). And finally, has science gone as far as it can in providing relief, even blissful relief, for children who stutter and their parents? Is verbal response contingent simulation the only contender for a serious treatment? Surely the answer is inconceivably not. References De Nil, L. F., & Brutten, G. J. (1991). Speech-associated attitudes of stuttering and nonstuttering children.[erratum appears in J Speech Hear Res 1991 Jun;34(3):703]. Journal of Speech & Hearing Research, 34, Ezrati-Vincour, R., Platzky, R., & Yairi, E. (2001). The young child's awareness of stuttering-like disfluency. Journal of Speech, Language, and Hearing Research, 44,

7 Jones, M., Onslow, M., Packman, A., Williams, S., Ormond, T., Schwarz, I., et al. (2005). Randomised controlled trial of the Lidcombe programme of early stuttering intervention. British Medical Journal, 331, Jones, M., Hearne, A., Onslow, M., Ormond, T., Williams, S., Schwarz, I., & O'Brian, S. (2007) Extended follow up of a randomised controlled trial of the Lidcombe Program of Early Stuttering Intervention. Manuscript in preparation. Martin, R. R., Kuhl, P., & Haroldson, S. (1972). An experimental treatment with two preschool stuttering children. Journal of Speech and Hearing Research, 15, Miller, B., & Guitar, B. (2007). Long term outcome of the Lidcombe Program of Early Stuttering intervention. Manuscript in preparation. Onslow, M., Jones, M., O'Brian, S., & Menzies. (2007). Biostatistics for clinicians: Defining, identifying, and evaluating clinical trials of stuttering treatments. Manuscript in preparation. Reed, C. and A. Godden (1977). "An experimental treatment using verbal punishment with two preschool stutterers." Journal of Fluency Disorders, 2, Robey, R. R. (2005). An introduction to clinical trials. ASHA Leader, May 24, 6-7 & Trajkovski, N., Andrews, C., O'Brian, S., Onslow, M., & Packman, A. (2006). Treating stuttering in a preschool child with syllable timed speech: A case study. Behavior Change, 23, Yaruss, I. S., Coleman, C., & Hammer, D. (2006). Treating preschool children who stutter: Description and preliminary evaluation of a family-focused treatment approach. Language Speech and Hearing Services in Schools, 37,

8 As a therapist who has trained in Europe I have not learned how to do the %SS during my university degree. Is it possible to do the Lidcombe Program while missing out this part of the measuring? The Severity Ratings are, I appreciate, very important, but is the addition of the %SS necessary, and if so why? The published research about the Lidcombe Program includes %SS measures along with severity rating measures as the tools used to determine progress, to specify when a child has achieved criteria to enter Stage 2 and to determine satisfactory progress through Stage 2. Leaving out the %SS measure totally from the process then could influence the validity of some clinical decisions e.g. whether criteria necessary for Stage 2 has been achieved. Ed note: See Harrison, E., Onslow, M., & Menzies, R. (2004). Severity ratings and parental verbal contingencies for stuttering in the Lidcombe Program. International Journal of Language and Communication Disorders and Onslow, M., Harrison, E., Jones, M., & Packman, A. (2002). Beyond-clinic speech measures during the Lidcombe Program of early stuttering intervention. Acquiring Knowledge in Speech, Language and Hearing, 4(2), I have read in several places that the average time to Stage II is 11 sessions. I have never achieved this result myself though I have had good success using the programme, and wonder whether this is because I am doing something wrong. Is there anything that can help us work out how long treatment might take, for example what makes it quicker, what makes it slower? How soon should I start to see the Severity Ratings fall? It is important to note that the 11 sessions refers to the median time to reach Stage 2. This means that half the cohort of children reached Stage 2 in 11 visits however half took longer than the 11 weeks. If you have had good success in getting children into Stage 2 it sounds like you are doing a pretty good job. Whether progress could have happened more quickly probably needs to be determined case by case. There are a few things to take into consideration. We know that a high level of severity at the start of treatment is a predictor that treatment is likely to take longer. Ref: Jones et al. (2000).JSLHR, 43, ; Kingston et al. (2003) Int. J. Lang. Comm. Dis., 38, Research also indicates that we can expect about a 30% drop in severity ratings over the first 4 weeks of treatment. Ref: Harrison et al.(2004) int. J. Lang. Comm. Dis, 39, Generally ongoing progress is expected with the Lidcombe program. If progress is not occurring then it is important to consider all aspects of the treatment process to determine why progress might not be happening. Early consultation with colleagues or clinicians experienced in the Lidcombe program can assist the treating clinician to ensure optimal progress. 8

9 Dear Sue I am seeing a little boy of 4years 3months with a severe stutter. We started therapy 8 weeks ago at which time he was getting consistent 7s and 8s on his severity ratings at home and 23%SS in the clinic. We have worked well in this time, his mother is very skilful with the contingencies, and his daily ratings have come down to around 5s and 6s at home, 12%SS in the clinic. In the structured therapy times he does extremely well and is stutter-free for up to two sentences at a time. My concern is that while there has been some generalisation in his daily life he is dramatically better in his therapy times, much more than is reflected in his severity ratings. It seems as if he 'does' smooth talking like it was a game we are playing but does not seem to do the same in his everyday talking. I understand that he needs to do something different in his therapy - something more unstructured perhaps? - to generalise it into his everyday life - but as his scores are so high in the day I am not sure what I can suggest that is safe for him. Can you give me some advice, and ideas, on how to move the therapy along and make the changes that will help him generalise his smooth talking more effectively? Sue replies: It sounds like this boy has made some good steady progress so far given that he has a severe stutter. However he is still getting severity ratings of 5s and 6s and his therapy times would still involve reliance on structured conversation, ensuring he achieves a high level of stutter-free speech during that time. I am not surprised that he is dramatically better in his treatment times than general conversation. His greater success with speech in structured treatment is being supported by the way conversations are conducted. Outside of treatment times there is not that structure to support conversations. The other information to keep in mind is that children with a high level of severity at the beginning of treatment tend to be those that take longer in treatment. However you also mention a concern that he appears to do smooth talking like it was a game. There are certainly some issues to be mindful of in working with the Lidcombe Program to ensure optimum progress is made and generalisation occurs as a matter of course. 9

10 Ensure that structured conversations in his therapy times are as natural as possible and allow for the easy transition from more to less structured as the child progresses. It is important to find the correct balance for the therapy conversation so that it is structured enough to elicit a suitable level of stutter-free speech but not so structured that it does not extend his fluency skills. The parent needs to be able to judge the extent to which they need to structure their conversation according to what the child shows they can manage. This will vary from one day to another and also within any particular treatment time. The goal is that structured conversations will become less and less structured as the child progresses and more and more like everyday conversation. Look carefully at his therapy activities. Ensure that a variety of activities are used to support therapy conversations. Vary the times of day and vary the locations for therapy. In addition start to introduce some verbal contingencies for stutter-free speech only, into everyday conversations. The parent can listen in for an opportunity to praise a spontaneous stutter-free utterance. Or as his severity ratings are still fairly high the parent might need to set up some successful opportunities. Train the parent to do this by using structured conversation in an everyday situation. Make it successful for the child, choosing an appropriate time and an easy conversational setting. Some examples follow: 1) Counting in unison and allowing for a phrase completion as the child helps the parent put the apples in the bowl eg. 1,2,3, we ve got three---- 2) Use binary choice to elicit a single word or a short phrase e.g. Do you like the shoes with the buckles or the shoes with the laces? Our grateful thanks for the answers to Just Explain That Again and Dear Sue go once again to the Stuttering Unit Team in Australia with contributions from: Margaret Webber, Stacey Sheedy, Mary Erian, Wendy Lloyd. 10

11 The following article from Rosalee Shenker gives a summary of the recent conference, Mont Tremblant II (MT2) International Symposium on Stuttering in Children, which took place in Montreal, Canada. It is a taster for a more detailed summary of the papers that were presented which is scheduled for the next edition of Lidcombe News in May The second Mont Tremblant Seminar took place on November 18 th 20 th in Montreal and provided an excellent opportunity for members of the Lidcombe Program Training Consortium (LPTC) to meet. The first conference was held in 2002 in response to the need for a forum for consortium members. This 2002 seminar took place at Mont Tremblant, a ski resort north of Montreal, while MT2 was held in the Old City of Montreal, a popular tourist venue. Eight LPTC members attended MT2 including Mark Onslow and Elisabeth Harrison from Australia, Barry Guitar, Melissa Bruce and Rosalee Shenker from North America, Rosemarie Hayhow representing the UK, Lone Cordes Felby, from Denmark, and Tina Lattermann representing Germany. Over 50 Speech Pathologists from Canada and the USA participated in this meeting which focused on two themes: Potential effect of Linguistic Aspects of Stuttering, and Temperament, on the treatment of children who stutter. The goal of the meeting was to present papers to the plenary group followed by a forum for reaction to the papers in small group discussion and personal interaction among the participants. Following an opening reception in a beautiful old inn connected to the hotel, which gave everyone an opportunity to get to know one another and rekindle old friendships, the conference got underway on the first day with a keynote address by Mark Onslow titled Is the Lidcombe Program the end of the search for a treatment for early stuttering? This talk provided an early opportunity for active exchange among the participants. Following this presentation Elisabeth Harrison gave a talk entitled Everyday Language of Children who Stutter. This talk was an introduction to a project co-authored by Elisabeth Harrison and Beth Armstrong from Macquarie University and Sally Hewat, Elizabeth Spencer and Alison Ferguson from the University of Newcastle. The talk focused on the role of Sociolinguistics as a methodology for understanding the impact of stuttering on speakers participation in everyday conversations. Temperament, the theme of the second day, was highlighted by three presentations. Barry Guitar, who acted as moderator of this presentation, opened with an overview of What is currently known about temperament and stuttering? Per Alm followed this presentation through video teleconference from Sweden, with a fascinating summary of his current work summarising the Risk of persistent stuttering in children with emotionally sensitive and reactive temperaments. Dr. Klaus Minde, chairman of the Department of Psychiatry, McGill University and director of the Paediatric Anxiety Clinic at the Montreal Children s Hospital, provided an Overview of anxiety disorders in children, with an emphasis upon stuttering. A highlight of the conference was the very popular problem-based case presentations and small group discussion that took place each afternoon. 11

12 Participants were invited to prepare and present a case, identifying a problem to be discussed. They were divided into small groups, each group being facilitated by a member of the LPTC. The groups then presented their summary of the case discussion to the plenary group. This provided just the right mix of formal presentation and informal case discussion. The group lunches were another highlight allowing for continuing discussion and an informal exchange of ideas. The feedback for this seminar was excellent and encouraging for future meetings of this type. A more detailed presentation of the talks given at MT2 will be forthcoming in the next Lidcombe News. Members of the Lidcombe Program Trainers Consortium who attended the symposium: Back row L-R: Elisabeth Harrison, Melissa Bruce, Mark Onslow and Tina Lattermann Front row L-R: Rosalee Shenker, Lone Cordes Felby, Rosemarie Hayhow and Barry Guitar Participants at the Symposium 12